Looking for an expert in Chiari

[Tanya4706]

Hi all, I've had three decompressions and have recently been told that my new scans indicate that my symptoms now are caused from my NS removing too much bone causing brain slump. I also have Empty Sella Syndrome from the pressure, IH, and Syringomyelia from c2 to t10. I'm looking for an expert who routinely treats this type of case... any suggestions??

[selmaS]

  Hi and welcome to the Chiari forum.

I am so sorry to hear you are still having issues after 3 surgeries....but I have met a few others with the same situation so it is not unheard of....but still should not happen.

Knowing where you are located will help me know what area you are in to give you some names of Drs for you to research....as the list is not a referral nor an endorsement for those on it....it is meant to be used as a tool to find the right Dr for you..

Cerebral ptosis or brain slump is what results when the bone removed is too large and then there is nothing left to prevent the rest of the brain to compress the spinal cord or brain stem.....

To correct ptosis, a sling is placed to hold the brain up in position where it will not compress the brain stem or spinal cord...or block CSF flow...which can cause the syrinx to form or grow larger.....

Not knowing again who you went to and what experience they have had, but you will also want to rule out ALL related conditions.....

We will try our best to help guide you to help.....know you are not alone.

[Lottida]

Hi & sorry to hear that you have been through so much & still having problems!!  I'm not sure where you live but if you could post it on this thread Selma will be able to give you a list of doctors (if any) in your area.  There is a list of Chiari specialists for each state on this forum so that you can research those doctors that you may be interested in.   Many Chiarians have to travel a bit to get to a true Chiari specialist.  Btw I have heard of brain slumping & recently read an article about having to use titanium plates/screws to give the brain support where too much skull was removed...............The outcome for that patient was successful.  

If you don't mind me asking.......why 3 decompressions??  Did you have a duraplasty & laminectomy with the 1st surgery??  Did you have a syrinx prior or is that new??   You definitely need to have a 2nd opinion from a Chiari specialist.  You can call or email the Chiari Institute in New York if there is no doctor close to your(you can send them your records & they do phone interviews to see if they can help you in any way)..............just not sure if they charge a fee to review your records.   Good luck with your search & hopefully you will get a successful outcome also!!